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Laura, In The Media

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After years, mystery ills diagnosed

April 3, 2005
By JANET MARSHALL

On the day her life changed for the better, Laura Zastrow was exhausted. So much so that she almost didn’t go to the Quantico commissary, as she’d planned.

For years, Zastrow had felt run down without knowing why. One doctor chalked it up to depression. But that afternoon at Quantico, a stranger offered another diagnosis: Cushing’s disease.

Rare and often misdiagnosed, Cushing’s causes fatigue, weight gain, hair growth, mood swings, high blood pressure and other ills, all familiar to Zastrow.

The stranger, Jayne Kerns, recognized her own puffy face and hairy arms in Zastrow.

“I said, ‘I feel like I’m looking in the mirror,'” Kerns said.

Kerns encouraged Zastrow to check out a Cushing’s Web site, which Zastrow did. Every symptom listed matched her condition. Her doctor ran some tests, and the results confirmed Zastrow had Cushing’s, a hormonal disorder often brought on by a tumor.

The chance meeting in September 2003 transformed Zastrow’s life. In the months since, she’s had surgery to remove a large tumor on her pituitary gland and rediscovered her old, healthier self.

“My energy is coming back,” said Zastrow, of Locust Grove. “I’ve lost a lot of weight. I feel good. I don’t feel like I’m in a fog anymore.”

Kerns, of Spotsylvania County, has made it a mission to raise as much awareness as possible of Cushing’s since being diagnosed with the disease in 2000. She’s written President Bush asking him to declare a National Cushing’s Awareness Day in April.

Her meeting with Zastrow was first described in a Free Lance-Star profile of Kerns in 2004. At the time, nobody yet knew just how life-altering that meeting would be.

It emboldened Kerns to keep reaching out to people she thinks have the disease. And it gave Zastrow hope for a healthier, more energetic future.

“I was at the point where I was deteriorating so fast that if Jayne wouldn’t have approached me, I honestly don’t know what would have happened,” Zastrow said recently. “Obviously, I didn’t know anything about [Cushing’s], and neither did my doctors.”

For those with the disease, April 8 is the unofficial day to recognize it and the man–Dr. Harvey Cushing–who first put a name to it.

People with Cushing’s suffer from excessive levels of cortisol, the body’s stress hormone. The condition can be caused by long-term use of certain drugs, such as prednisone for asthma.

Often, Cushing’s stems from an overproduction of cortisol by the adrenal glands. The pituitary gland sometimes over-stimulates the adrenals, triggering the problem. Tumors on the adrenal or pituitary often are at the root of the problem, and treatment can involve removing the glands.

Kerns’ diagnosis followed months of maddening efforts to pinpoint why her body deteriorated, and never recovered, after childbirth.

She said she was misdiagnosed many times, and that one doctor, frustrated by her recurrent problems, told her he no longer had time to listen to her and referred her to another physician.

Kerns ultimately had her adrenal glands removed.

Each year, 10 to 15 people out of every million are thought to be affected by Cushing’s, making it highly uncommon.

“Doctors think that Cushing’s is too rare for people to have it,” Kerns said. “And I truly believe that it is not as rare as people think.”

Another local woman, Jennifer Belokon of Fredericksburg, has Cushing’s. She was serving in the Army in Iraq when she began feeling weak and gaining weight, adding 60 pounds in three months.

The Army flew her out of Iraq and sent her to Walter Reed Medical Center. After being diagnosed with Cushing’s, she had her adrenal glands removed.

“Now, I have no adrenaline, no steroids or anything that will help me produce that second wind when doing anything,” Belokon wrote in an e-mail.

Yet she’s resumed exercising and is training to run the Rock ‘n’ Roll half-marathon in Virginia Beach in September. She ran a 10-mile race a few months ago.

“My time was nothing big,” Belokon wrote. “But I was proud of myself for finishing.”

Getting treated for Cushing’s is life-altering, all three women said. Just finding out what’s wrong is profound because a diagnosis often follows months or years of mysterious and unsettling ailments.

“It changes people’s lives when they figure out what’s going on,” Kerns said. “It’s kind of like discovering that you have diabetes, and then you get insulin. You find something that’s going to make you feel better.”

For more information on the disease and its symptoms, which include purple stretch marks, check out cushings-help.com

To reach JANET MARSHALL: 540/374-5527 jmarshall@freelancestar.com
Copyright 2005 The Free Lance-Star Publishing Company.


JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.

Listen to CushingsHelp on internet talk radio

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Mak M, Pituitary Bio

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My name is Makena, I’m a 20 year old in California recently diagnosed with Cushings.

I have been having a really rough couple years with a multitude of symptoms. I have been suffering from severe depression since I was around 14, and have been prescribed an endless amount of antidepressants over the years. None of them have worked for me no matter the dose or brand.

The first symptom to cause me to visit the doctor was an extremely high blood pressure and pulse rate. I could always feel my heart pounding in my ears and felt on edge 24/7. My psychiatrist first told me it was anxiety and put me on anti-anxiety medication. That did not help, which led me to see my primary Dr. since my resting heart rate was around 150bpm. I have been put on blood pressure medication which has helped regulate me but I still feel very on edge.

My blood tests show very low vitamin D, very high testosterone, and very high cortisol. My Dr ordered an MRI on my brain and a CT of abdomen. The CT came back normal, but a 6mm microadenoma was found on my pituitary gland so I was referred to an endocrinologist. After doing a 24hr urine test and a saliva test, the results for that came back normal.

My main concern being: I can only physically feel my cortisol levels rise at night. I’ve had severe insomnia and daytime fatigue but the jittery and anxious feeling comes at night and then I crash during the day. I have had severe weight gain in my stomach and face as well as purple stretch marks all over. Losing hair, light sensitivity, vision loss, muscle and bone weakness, easily bruising, a stomach ulcer, a buffalo hump, and constant fatigue have ruined my life. I feel like my body is deteriorating and am not the same person I once was.

I’m hoping I will be able to get surgery to remove the tumor but am concerned that I won’t be approved for it because some tests came back normal. I am not sure what my next step will be but am happy to find stories I can relate to here on this website.

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Louise, Adrenal Bio

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Newly diagnosed upon incidental finding on CT related to abd pain. Just want these adrenals out, but I fear the recovery.

I don’t know which is worse…Cushings or Addison’s??

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Krista, Pituitary Bio

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Diagnosed with Cushing’s Disease March 2015 .

Had Transsphenoidal hypohysectomy surgery to remove a 6mm adeoma on April 29th .

On replacement hydrocordisol for a year and a half .

Currently in remission. Also went through Thyroid cancer treatment 2 years before Cushing’s diagnosis .

Krista added her Helpful Doctor, Maria Fleseriu, to the Cushing’s MemberMap

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Jayne, In The Media

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From http://fredericksburg.com/News/FLS/2004/032004/03092004/1287556

Cushing’s didn’t rob woman of her fertility

Jayne Kerns

Photo by Scott Neville / The Free Lance-Star

Jayne Kerns holds her 5-year-old daughter, Catherine, and 2-month-old son, Brian, at their home in Spotsylvania. Kerns, who was diagnosed with Cushing’s disease two years ago, became pregnant despite her illness, which usually makes women infertile.

 

Baby boy is miracle to mother with Cushing’s disease

By MARCIA ARMSTRONG
The Free Lance-Star

DATE PUBLISHED: 3/9/2004

THERE WAS A moment in 1999 when Jayne Kerns just knew that something was wrong with her body.

The Spotsylvania County resident was tired and irritable. Her muscles hurt. Her hair was falling out.

The silvery stretch marks acquired while pregnant with her daughter Catherine turned into angry, purple streaks. Kerns wasn’t losing the pregnancy weight, either. In fact, the pounds were still piling on.

“I was walking every day, eating right, doing the ‘Best Odds’ diet,” said Kerns, 40. “But, it wasn’t helping. I just didn’t feel right.”

One doctor said Kerns’ complaints were not unusual for a postpartum body. When another told her to exercise more and eat less, she kept a diary of the fat, carbohydrate and caloric content of everything she ate and began walking a mile three times a day.

But, a year later, Kerns was even heavier and her health was getting worse.

The slightest bumps caused her skin to bruise. Hair began to grow on her face and arms. Her eyesight was plagued by double vision, tunnel vision and spots. She had trouble concentrating and was beset with short-term memory loss. Her blood pressure skyrocketed to stroke level. Her menses stopped.

The symptoms worsen

Doctors tested for lupus, diabetes and fibromyalgia, but the results were negative. One physician gave up on a diagnosis, telling Kerns he didn’t have time to listen to her roster of complaints. He referred her to a psychiatrist for a prescription for antidepressants. Another told her to see a nutritionist.

By then, Kerns’ muscles hurt so badly it was hard for her to hold Catherine or let her climb onto her lap. She couldn’t get down on the floor to play blocks with her daughter or push her on the swing set. Bedtime became a struggle.

“I’d go upstairs and she’d run downstairs, and there was no way I could grab her and carry her back up,” Kerns said.

Kerns’ appearance took on that of a much older woman, even though she was only in her mid-30s. She had a hump in her back. Her thinning hair was turning gray. People who didn’t know her thought she was Catherine’s grandmother.

Then, in May 2000, a physician’s assistant told Kerns her symptoms matched those of Cushing’s disease, a hormonal disorder caused by the overproduction of cortisol, the “fight or flight” hormone needed in times of stress.

The diagnosis was a long shot, as the disease is rare, affecting only 10 to 15 people out of 1 million each year, according to the National Institutes of Health.

But, tests revealed that Kerns’ cortisol levels were 25 times higher than normal.

The physician’s assistant was right. Kerns had Cushing’s.

A tumor on Kerns’ pituitary gland was causing her adrenal glands to produce the overabundance of cortisol, but the mass was so small doctors couldn’t find it.

Kerns had four options.

Doctors could remove her pituitary, taking the obscure tumor with it. Or, they could zap the gland with gamma-knife radiation. The third choice was to put Kerns on medication that would lessen cortisol production. And last, she could have her adrenal glands removed.

With any of the choices, she was unlikely to ever have another baby.

“Usually, people who have Cushing’s are infertile because the disease alters the normal endocrine milieu of the body and interferes with ovulation,” said Dr. Fay Redwine, a perinatologist with Richmond-based Central Virginia Perinatal Associates.

In fact, it is so rare for a woman with Cushing’s disease to get pregnant that Redwine said she expects to see only two or three such cases during her medical career.

Baby surprise

Kerns took the cortisol-suppressing medication until it began to destroy her liver. Then, she had her adrenal glands removed.

Immediately after the surgery, Kerns’ eyesight cleared. Her blood pressure dropped to normal levels. And, three months after the operation, something else changed, too.

Kerns became pregnant.

“That was a surprise, a big surprise,” she said. “I was happy to know that I was still fertile.”

The pregnancy lasted only 10 weeks before ending in miscarriage. But, 15 months later, Kerns was pregnant again.

“The first thing I felt was total elation, then total fear of losing the baby,” she said.

Her anxiety was warranted, Redwine said, because the fetus of a mother with Cushing’s is at much greater risk of intrauterine fetal death and pre-term birth.

But, it was during this pregnancy that Kerns began to feel almost normal again.

Her muscles quit aching. Her moods leveled out.

“My body somehow said, ‘We’re going to have this baby, so we have to be healthy,'” she said.

Kerns’ obstetrician, Dr. William Hamilton, increased the dosage of Kerns’ hydrocortisone pills to cover the stress pregnancy put on her body. Redwine monitored the baby’s growth and movements.

And, on Dec. 15, 2003, Brian Matthew Kerns was born, full-term and healthy.

“He is our miracle baby,” Kerns said.

What’s in the future

Cushing’s has taken a permanent toll on Kerns’ life.

The purple stretch marks will never go away. Weight will always be a problem.

Kerns must have a magnetic resonance imaging scan every six months as doctors keep looking for her pituitary tumor.

Kerns regrets that she was so sick when Catherine was an infant and toddler that she couldn’t devote herself to mothering. And, it’s hard for Kerns to keep from crying when Catherine, now 4, doesn’t recognize her in the pre-surgery pictures in the family photo albums.

Even so, life is still very, very good.

Kerns spends her days cuddling her son and playing with her daughter. She’s getting stronger. She feels much better.

She’s thankful that the only effect the disease had on her relationship with her husband, Robin, was to make it stronger.

“Some men can’t handle it,” Kerns said. “I’ve read stories online about women who are getting a diagnosis and a divorce. But, Robin stood by me through everything: the surgery, doctor’s appointments, all the questions.

“He has kissed my stretch marks and said ‘No matter what happens, you are still a beautiful person.'”

Heal and share

But, for all it’s taken from Kerns, Cushing’s has given her something back: the courage to speak out.

She recently contacted Gov. Mark Warner’s office to enlist his support of a national day for Cushing’s awareness.

And last September, she approached a woman in the grocery store who she thought looked like a mirror image of herself: the same moon face, the same upper-body obesity, the same hairy arms.

“Excuse me,” she said to the woman. “I have to tell you my story.”

“I was a little taken aback,” said Laura Zastrow, who lives in Locust Grove. “I’d never heard of Cushing’s.”

Zastrow, 34, told Kerns she’d been looking for a diagnosis for her weight gain, mood swings and stretch marks for four years.

Kerns referred Zastrow to an Internet Cushing’s support group that features a lengthy list of Cushing’s symptoms.

“I couldn’t believe it,” Zastrow said. “It was like me, all the symptoms, everything.”

Tests showed that Zastrow has a tumor on her pituitary. But, unlike Kerns’ tumor, doctors know exactly where it is. She will have it removed this spring.

Zastrow calls Kerns her guardian angel.

“If she hadn’t said anything,” Zastrow said, “I’d still be wondering what in the world is wrong with me.”

For more information about Cushing’s disease, visit the Web site cushings-help.com.

To reach MARCIA ARMSTRONG: 540/374-5000, ext. 5697 marciaa@freelancestar.com


JAYNE KERNS IS A MEMBER OF THE CUSHING’S HELP AND SUPPORT MESSAGE BOARDS.

Jayne has seen several potential Cushies and spoken to them. Many have contacted their doctors and turned out to have Cushing’s Syndrome. She was also instrumental in setting up the first Cushing’s Awareness Day and continues to provide Cushing’s Awareness tables at local health fairs.

One of the patients Jayne urged to check out Cushing’s is Laura Zastrow. In the article about Laura, all the credit is given to Jayne.

Jayne answered questions in an online Voice Chat January 31, 2008 at 6:30 PM eastern. Archives are available.

Jayne and Robin also hosted a Special Cushing’s Awareness Day live chat April 8, 2008. Archives are available.

Listen to CushingsHelp on internet talk radio

 Subscribe to the CushingsHelp podcasts on iTunes

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Sahana (Sahana), Adrenal Bio

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My daughter had hair loss since age of 15
At 16 she had a hump at the back of her neck
Age 17 had anxiety, negative thoughts and memory loss.
Weight gain, acanthosis and menstrual irregularities.

I had shown her to many dermatologists for hair loss. At 16 had shown her to 2 endocrinologists
At 17 to psychiatry, gynaecologist and 2 more endocrinologists finally arriving at diagnosis after cortisol and ACTH tests followed by dexa suppression and CT abdomen.
She was operated laparoscopically and is now 7 mths postop.
She is off steroid supplementation and is improving steadily.

I WISH THERE WAS MORE AWARENESS ABOUT THIS DISEASE !!
My daughter has suffered a lot and I pray she recovers completely 🙏🏼

 

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Michelle (Michelle), Cyclical Cushing’s Bio

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I am an avid runner run about 15 miles a day then in April I gained 50 lbs my worst nightmare. I gained 50 lbs in two lbs with no change in activity or eating. I was ashamed and embarrassed I didn’t want anyone to see me my friends or family.

Then I broke out in hives all over my body I went to urgent care. They saw a large hump on the back of my neck thought I had cushings. I saw 10 different doctors in la. One passed me off to another.

It was a nightmare then I went to Mayo Clinic where she thought I had cushings from an external source ( September ) she told me to just wait and everything would go back to normal. Even though there was no outside steroid source.

Then I wasn’t getting better in the end of October I went to two doctors in nyc, who didn’t do anything.

Finally I found an artical on cyclical cushings and sent it to my doctor at Mayo Clinic. She agreed with me and told me to come in. My cortisol was finally high now and she’s running other tests I hope I’m fixed soon.

I’m so sad and depressed.

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Stephanie M (Stephanie), Pituitary Bio

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I found out I had a tumor on my pituitary gland in Nov 15 quite by accident, as you do!

I’d had an ovarian cyst and endometriosis taken out quite easily and then a horrific back surgery to take out a cyst on my lumbar spine. I was ( and am still) dealing with chronic severe nerve pain and numbness in my left leg and foot.

I’d been told I needed to watch what I eat and exercise even though I did both and still I gained 30 lbs. An ENT found the tumor on an MRI after I had a lymph node practically explode on my neck! Ugh.

We were getting ready to relocate to AK from TN and still hadn’t been diagnosed. I had to travel to Seattle from Fairbanks for all my appts!

Long story short, I had a macroadenoma on my pituitary gland. By the time I had my first surgery, I could barely think rationally anymore, I was in terrible pain, I had very little muscle strength left, and I’d gained a total of 70 lbs. I can’t remember much of that time. I had negligent pms and great but distant specialists.

I had to go back for a second surgery then have radiosurgery w/ a gammaknife in the Spring of 2017. I took mifepristone for too long because my Seattle endocrinologist moved to AZ. It worked well then it was making me sick. I couldn’t eat and lost 50 lbs. I changed all my doctors and am now making the uphill climb. I’ve gained 10 lbs back and my progress with muscle strength is so sloooow. I’m thinking much clearer now.

Because of this experience, I have learned to be an advocate for myself in the medical field, I am a cynic about the human race still but appreciate people and the world a lot more. I have learned to be patient because my life has slowed down.

I am the only Cushing’s patient in Fairbanks I think. It’s hard because I’m in remission but it’s just stage 3 after diagnosing then curing. Now it’s recuperating after being ravaged by the disease. I have no idea how blogs work. I don’t know where to start w/ regards to mining all the info. Thanks for having this site. I was going to make my own if I hadn’t found it!

Stephanie’s doctor

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MaryO, 31st Pituitary Surgery Anniversary

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Today is the 31st anniversary of my pituitary surgery at NIH.

As one can imagine, it hasn’t been all happiness and light.  Most of my journey has been documented here and on the message boards – and elsewhere around the web.

My Cushing’s has been in remission for most of these 31 years.  Due to scarring from my pituitary surgery, I developed adrenal insufficiency.

I took growth hormone for a while.

When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.

Last year I went back on it (Omnitrope this time) in late June.  Hooray!  I still don’t know if it’s going to work but I have high hopes.  I am posting some of how that’s going here.

During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes.  Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.

In the last couple years, I’ve developed ongoing knee issues.  Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee.  September 12, 2018 I did get that knee injection (Kenalog)  and it’s been one of the best things I ever did.  I’m not looking forward to telling my endo!

I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!

My mom has moved in with us, bring some challenges…

But, this is a post about Giving Thanks.  The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂

I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.

I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH.  Unfortunately, Dr. Oldfield died in the last year.

I’m thankful for Dr. Harvey Cushing and all the work he did.  Otherwise, I might be the fat lady in Ringling Brothers now.

To be continued in the following days here at http://www.maryo.co/

 

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